One hospital trust said: “The main barriers have been, and remain, financial and staff resources. NICE produce guidance but the government do not provide the funding for the implementation of the guidance. It is a recurring theme and, with the increasing use of genomic medicine, is a major problem for pathology departments.”

But the charity says the cost of the test is small compared to the cost of treating patients for bowel cancer, which they say is around £25,000.

“A lack of funding and resources from CCGs means that hospitals’ hands are tied. Until these issues are being addressed, generations of families will continue to be devastated by cancer and lives will be needlessly lost.”

Their campaign is being backed by TV presenter Matthew Wright, whose family has a history of bowel cancer.

“At the time of my father’s death, my family and I were told about Lynch syndrome and the 50% chance that me and my sister could have it too. Although I was convinced I had it, it was only until five years after my father’s death that I found out I didn’t have Lynch syndrome,” he said.

“We need to address this crisis of families not being tested for Lynch syndrome. We have the right to know if we have a higher risk of bowel cancer, the disease is deadly and it can’t keep devastating families like mine.”

Annika Perdomo, who is 53 and from Warwickshire, has Lynch syndrome – she was diagnosed with bowel cancer at the age of 49.

“The saddest thought for me is the fact that there’s a 50/50 chance of my 10-year-old daughter having Lynch syndrome too. She will be tested when she reaches the age of maturity, as will my nephew and nieces.

“But the major difference for them is that they will be screened and monitored from an early age. Unlike me, any symptoms they may be experiencing however young they are at the time, their GP will at least sit up and listen.

“Unfortunately, three of my siblings have since tested positive with the genetic condition. Lynch syndrome is very scary due to the fact that tumours can grow more rapidly.

“It was for this reason that I opted for preventative surgery two years ago by having a full abdominal hysterectomy to rid the chance of me ever having an endometrial cancer. My sister also has Lynch syndrome and has been through the same preventative surgery.”

An NHS England spokeswoman said: “There are clear NICE guidelines for when it’s appropriate to test for Lynch syndrome that we expect NHS providers to follow but the quality of cancer care is always improving and the NHS is catching more cancers early with 7,000 more people surviving cancer compared to just three years ago.”